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X-WR-CALDESC:Events for National Organization for Rare Disorders
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DTSTART;VALUE=DATE:20260226
DTEND;VALUE=DATE:20270101
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UID:10001176-1772064000-1798761599@rarediseases.org
SUMMARY:MPN Research Foundation Global Patient Unmet Needs Assessment
DESCRIPTION:2026 Global Patient Unmet Needs Assessment is open! @MPNResearch Foundation invites individuals living with a myeloproliferative neoplasm (MPN) to participate in the 2026 Global Patient Unmet Needs Assessment. Your insights help guide future research\, improve resources\, and highlights where unmet needs remain for those living with MPNs worldwide. \nTopics include:\n• MPN diagnosis & monitoring\n• Therapies & clinical trials\n• Symptoms & related conditions\n• Access to information & resources\n• Emotional health & quality of life \nTake the assessment: \nhttps://www.tfaforms.com/5184100\nPreview 2024 assessment highlights:\nhttps://mpnresearchfoundation.org/mpn-unmet-needs-assessment-preview/\nPreliminary results will be shared in Summer 2026. Please share widely — especially with international MPN communities — to help identify unmet needs worldwide.
URL:https://rarediseases.org/event/mpn-research-foundation-global-patient-unmet-needs-assessment/
CATEGORIES:NORD Member Event
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DTSTART;TZID=America/New_York:20260526T130000
DTEND;TZID=America/New_York:20260526T140000
DTSTAMP:20260519T212128Z
CREATED:20260519T212128Z
LAST-MODIFIED:20260519T212128Z
UID:10001229-1779800400-1779804000@rarediseases.org
SUMMARY:Webinar: Copay Accumulator Programs
DESCRIPTION:Prescription drug out-of-pocket costs are expenses that patients pay for medical care that insurance does not cover\, and are one of the 9 issue areas assessed on NORD’s State Report Card. We assess five key protections that some states enact to limit patient out-of-pocket costs for prescription drugs\, and one of these protections are copay accumulator bans. Join us for a webinar focused on copay accumulator programs on Tuesday\, May 26\, 2026\, from 1pm to 2pm ET. We’ll teach you about copay accumulator programs and discuss how you can get involved in advocating for policies that reduce patient out-of-pocket expenses on prescription drugs to support better access to the therapies rare disease patients need. \nRegister Here
URL:https://rarediseases.org/event/webinar-copay-accumulator-programs/
CATEGORIES:Advocate,For Patients and Families,NORD Events,Rare Action Network Events
ATTACH;FMTTYPE=image/jpeg:https://rarediseases.org/wp-content/uploads/2026/05/Copay-webinar-graphic.jpg
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DTSTART;TZID=America/New_York:20260528T160000
DTEND;TZID=America/New_York:20260528T170000
DTSTAMP:20260325T190143Z
CREATED:20260324T153247Z
LAST-MODIFIED:20260325T190143Z
UID:10001198-1779984000-1779987600@rarediseases.org
SUMMARY:NORD Volunteer Meeting
DESCRIPTION:In this session\, our Community Engagement team will provide a comprehensive\, high-level overview of NORD’s volunteer programming and the strategic initiatives. This is designed to give you a clear understanding of our mission and the various ways you can make an impact. We will conclude with an open-floor discussion\, providing a dedicated space for you to ask questions and collaboratively determine the most meaningful next steps for your unique volunteer journey. \nRegister Here
URL:https://rarediseases.org/event/nord-volunteer-meeting/2026-05-28/
CATEGORIES:Advocate,For Clinicians and Researchers,For Patient Organizations,For Patients and Families,NORD Events,Rare Action Network Events
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260529
DTEND;VALUE=DATE:20260603
DTSTAMP:20260202T220753Z
CREATED:20260202T220753Z
LAST-MODIFIED:20260202T220753Z
UID:10001124-1780012800-1780444799@rarediseases.org
SUMMARY:Rare Cancer Coalition at ASCO! 
DESCRIPTION:Rare Cancer Coalition at ASCO!\nMay 29 – June 2\, Chicago\, IL  \nThe Rare Cancer Coalition will have a booth in the Patient Advocacy Pavilion at the American Society of Clinical Oncology Annual Meeting\, where we’ll be engaging with patients\, caregivers\, and oncology professionals to share resources and highlight the rare community. Visit us to learn how we support our network of Rare Cancer Coalition members as they drive research and advocate for policies that improve outcomes for the rare cancer community.  
URL:https://rarediseases.org/event/rare-cancer-coalition-at-asco/
CATEGORIES:NORD Member Event
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